15250-m-cuypers

208 Chapter 11 interested if individual differences (optimism, self-efficacy, and personality traits) were associated with changes in HRQoL before treatment onset. Patients with suspected Pca ( n =377) were surveyed before biopsy, making this study one of the first to take a pre- diagnosis baselinemeasure. In case PCawas detected ( n =126), a follow-upquestionnaire was sent after treatment was chosen but had not yet started. Compared to the pre- diagnosis baseline, HRQoL was lower after receiving a Pca diagnosis and selecting treatment. In particular, role and cognitive functioning worsened, and elevated fatigue, constipation, and prostate specific symptoms were reported. In contradiction to the impaired overall HRQoL evaluation, sexual activity and functioning improved in the period between the first and second questionnaire. Baseline HRQoL was not associated to subsequent treatment choice, but if a curative treatment was chosen, worse HRQoL was reported at follow-up compared to men who chose active surveillance, however, it has to be noted that treatment subgroups at follow-up consisted of small samples, impairing statistical power of these findings. At baseline, an association between HRQoL and optimism was found, and at follow-up an association between HRQoL and self-efficacy. No associations with personality traits were found, indicating that no traits could be identified that predict how a patient would respond to being diagnosed with Pca (i.e. experience lower HRQoL after diagnosis). Results from the studies presented in chapter 2 and chapter 3 supported the need for improved information provision and further support during Pca treatment decision- making. Decision aids (DAs) are interventions that have proven to be beneficial to help engaging patients and care providers in shared decision making (SDM). In absence of a Dutch DA with values clarification exercises for the treatment decision in Pca, a novel Dutch DA was developed ( Chapter 4 ). A pre-existing, evidence-based, Canadian Pca DA, and consultation routines in Dutch clinical care were analyzed, in order to adjust the original DA to the Dutch context. Although patients were not directly involved to the development of current DA, all DA content was based on a cross-cultural study identifying which information is required by Pca patients when selecting treatment, including Dutch patients 1 . Usability testing (n=11) was undertaken with patients and care providers, and resulted in 212 comments, which were all addressed in final adjustments to the DA. Prior to enrollment of the DA in routine clinical care, patients and care providers consented that the DA was comprehensible and well-structured, and that use of the DA in routine care was recommended. Patients included in usability testing all recently made a treatment decision to ensure an accurate evaluation what is required when choosing treatment, without the distress resulting from just being diagnosed being present. Key features of the newly developed DA included presenting information about active surveillance separately from detailed information about curative treatments (surgery and radiotherapy), and values clarification exercises which